Background: Motor neurone disease (MND) is an incurable neurodegenerative condition. Recent guidelines from the MND Association UK (MNDA) emphasise prompt diagnosis and monitoring of quality of life (QOL). However, primary literature indicates that diagnosis is often delayed through several factors, including unawareness of how MND presents and delays through multiple secondary referrals. The [hospital] operates an internationally-recognised MND clinic whose service has not been audited against the MNDA UK guidelines for the last 3 years.Aim: To assess how well the MND consultant’s service ensures prompt diagnosis and the provision of end-of-life care or appropriate respiratory or nutritional support.Methods: Using the [hospital’s] database, records from 77 patients consulted consecutively in the MND clinic were obtained. Service parameters were compared against reference standards for diagnostic delay and treatment provision.Results: 84.4% of referrals came from neurologists outside of the MND service, with only 13% from general practitioners. On average, it took 14.7 months for patients to be seen in the MND clinic following symptom onset. Riluzole and percutaneous endoscopic gastrostomy (PEG) were prescribed faster in bulbar-onset versus limb-onset patients, by 4 times and 9 times respectively. End-of-life care discussion was recorded for 26% of patients.Conclusion: Diagnosing MND remains challenging for primary care physicians, which may be alleviated by disseminating recent Red Flag Committee guidelines. Investigation and treatment provision differed between MND subtypes, given the poorer prognosis associated with bulbar-onset. End-of-life care documentation remains low, which is an issue for the multi-disciplinary team (MDT) to resolve through incorporating palliative services.
Choosing the place of death: Empowering motor neurone disease/amyotrophic lateral sclerosis patients in end-of-life care decision making
